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What support from professionals does your LO's get?

(12 Posts)
Anna85 Sun 25-Sep-11 18:01:27

Ds was diagnosed with HFA last September and ADHD July this year!

When diagnosis for ASD was given we had lots of support in way of Psychology Team, Family Support Worker and his communuty paediatrician.

As DS behaviour was still a problem he was referred to our local Autistic Spectrum Team where again he recieved support from a pyschologist and OT support.

Now we are about to be discharged from that service so will just be I assume follow up from his community paediatrician.

Regarding ADHD they literally gave diagnosis and have had no support just told me to go on parenting courses!

Just wondering what others LO's get as I know it is different in a lot of places!

StarlightMcKenzie Sun 25-Sep-11 18:06:28

Well a lot of agencies attend a lot of meetings about ds. But he never sees them.

Lougle Sun 25-Sep-11 18:26:13

DD1 has a place at Special School, so lots of her 'professionals' are already there.

In school:
Riding for the Disabled (RDA) 10 week course
She has SALT input
SHIP (School home Integration Partnership) - Behavioural

After school:
6 hours Kids Club (After school club on school site for children with SN) each week
3 Saturday Kids Club each term.

Out of school:
Learning Disabilities Team Community Nurse -Behavioural
Children with Disabilities Social Worker
4 hours support after school each week (only just started)

So we feel she is well supported at the moment. If she didn't have a behavioural element to her condition, I expect we would get less support. But, to be honest, I'd rather have no/less behavioural element and less support than lots of support and the behavioural element!

tiredoffightingwithjelly Sun 25-Sep-11 18:27:27

Message withdrawn at poster's request.

bochead Sun 25-Sep-11 18:45:27

Define "support". If it's endless meetings attended by people who have never met me before, much less my son, yet feel able to produce reports, and opine for hours on end - then we've endured a small army. The no of pointless meetings alone makes it impossible to hold down a job in the real world, it also stresses you out to continually correct chinese whispers, repeat early developmental hiistory etc yet again after a while.

If it's DIRECT therapy working with my child - NEVER had an hour's direct intervention. Off to Tribunal I am to get this, and sufficient trained TA hours he needs. Don't hold out much hope of winning BUT at least he's now attending school full time till the hearing. I need to tell him when he's older that I tried iykwim.

You could cut 95% of the "experts" from my local authority who have DS on their caseload, before any impact on kids would be noticed (& a lot of Mums would feel their burden lightened considerably by the absence of pointless "reviews" etc to boot.) The money released could be used to HELP sen kids no end. I only realised this when asked by a casualty doctor for the list of professionals involved with my kid last year after he'd been rushed to hospital in an ambulance.

graciousenid Sun 25-Sep-11 18:51:19

well we've seen quite a few people (ds is 5 & has ASD/language delay) - none were automatic referrals, I pushed for them for the simple reason of getting reports to support our DLA application - they don't actually do anything.

Paed - she's good, pretty much does whatever we want - email her as required & 6 monthly reviews.
SALT - we're onto number three, I complained about the first two; she mainly does assessments. Email as required & we see her every 6-8 weeks.

OT - got report, otherwise nothing.
Dietician - got report, waste of time.
Neurologist - ongoing.
Clin psych - jury is out - have report have asked her to fund specific programme for ds, if she can't do that we won't bother with further contact.
Portage - waste of time.
Autism outreach - declined.
Ed psych - declined.
HV - have banned from calling me.
SW - have done all I can to ensure that ds' details are not shared with anyone from the disabled children's team - I've made it very very clear that I want no contact with them.

We pay for ABA, RDA & swimming lessons & he gets 1:1 for 50% of his hours at nursery (Aiming High pay for that). Paed, SALT, psychologist & 1:1 all support our home programme & are aware that they are only there to supplement it if we feel it is required (portage & HV didn't really get that).

Agnesdipesto Sun 25-Sep-11 20:22:22

DS (4) has mod-severe ASD but normal IQ. He sees:
Paed twice a year but doesn't need to see him at all as no medical issues
Saw CAMHS once for diagnosis and never since - don't need it now as good ABA provision (won at tribunal) who address behaviour
Ed Psych x2 per year - again unnecessary as we have ABA consultant but LA want one of their own to 'monitor'. He's very nice but probably secretly agrees his time would be better spent on children who actually need the input.
SALT we see half termly (since been directed by tribunal before that we would not see for months on end)
OT saw once for sensory questionnaire which she over interpreted (turns out DS has no real sensory problems - all his behaviours were described as sensory when in fact they are just stims but as she was asked to look for sensory issues she seemed to see them everywhere)
Autism outreach - supposed to see weekly - saw them about twice in a year hence winning ABA - refused to see them since (told massive whoppers at tribunal) - they are fiercely anti ABA so to have them involved would be counter productive
ABA - daily - in truth with ABA we could do without anything else (well we might get an indep SALT who actually has some knowledge of autism but we would not miss the NHS SALT)
SW - we get 2 hours direct payments, a monthly free sitter service and hopefully soon a siblings group which runs activities in termtime and holidays

graciousenid Sun 25-Sep-11 20:49:51

basically I see the NHS people - who understand what evidence based means - and avoid all LA contact like the plague ("we have the best autism provision in the country, we don't do ABA") the don't like ABA & they don't like home educators.

StarlightMcKenzie Sun 25-Sep-11 20:56:37

They have the best in the country? Can't be so because that's what ours claim. Are we in the same one?

wasuup3000 Sun 25-Sep-11 22:27:01

Apparantly our LA's ASD provision is satisfactory (as I drink my warm milk before going to bed).....

graciousenid Sun 25-Sep-11 22:27:56

I'm pretty sure we're not - must be standard LA line sad The Autism Outreach woman said that to one of my tutors while he was meeting with the headteacher of the school who was up until that point perfectly happy to have ABA tutors supporting child (funded by parents - apparently LA doesn't fund an programmes at all). The child involved was de-registered from school before the end of his first term having gone backwards in all areas.

anonandlikeit Mon 26-Sep-11 08:55:41

ds2 has
Community paed - fantastic we see once every six months or more often if something is happening
HA ASD team, specialist sensory OT, motor OT, physio, psychologist & salt (but no actual support from salt) therapy from all the others & a home & school programme
Community physio - just regular reviews, therapy is now being done by ASD team
Orthotics, Every few months to review & recast if needed
Opthalmology (Hospital) & private (although we dont have to pay) irlens/visual strees specialist
Special school outreach, although they support the school as much as him but do provide IT equipment assessment etc.
He also gets brilliant support at his ms school by the school and lovely LSA

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